Levelling The Funding Field

"Everyone has the same goals in mind. The same goals are impacting cancer, preventing cancer, treating it better, improving the quality and length of life of people who are affected by cancer."
"Everyone knows it will not be a single project done by a single agency that will get us there."
"An alliance such as CCRA [Canadian Cancer Research Alliance] is helpful, but it can't mandate a change in focus or direction or targeting."
Elizabeth Eisenhauer, head, Department of Oncology, Queen's University School of Medicine

"Why did it [decision to target the most under-funded cancers] take so long? Tough question."
"It could be that you don't have capacity -- maybe you don't have researchers working in that area who have been trained in and thought about the disease. It could be that the disease has been addressed in a way that just hasn't made any difference."
"Ten years [to see research results] in the lifespan of the human species is nothing. It's less than a blink of an eye."
Jack Siemiatycki, professor of epidemiology, Universite de Montreal

"We have way too many funding vehicles."
"Politicians like to create new things. I think one thing we should be doing is consolidating, taking a look at how many agencies we have."
Jim Woodgett, cancer researcher, director of research, Lunenfeld-Tanenbaum Research Institute

"It would change the face of cancer research and cancer care in this country [his foundation's plan for collaboration and data-sharing]."
"Canada has some of the best researchers in the world. They try to share ideas, but there's just not a great infrastructure to allow it to happen."
Britt Andersen, executive director, Terry Fox Foundation

In the United Kingdom, a single charity is responsible for funding most of the research undertaken in Great Britain. It makes good sense that if a single entity is held responsible for distributing funding for vital research it has at its disposal all the necessary data it needs for decision-making. That little-to-no redundancies occur. That administrative costs are kept to a relative minimum, unlike a whole horde of funding bodies operating on their own with little communication between them. And the fact that some types of cancer have funding momentum behind them while others, perhaps more deadly do not, because the better-funded ones have vigorous self-interested campaigns.

A single funding body would be, in theory neutral. It would base its decisions on funding equality leavened by the understanding that some deadly cancers do require a greater focus, awareness and research dollars. As things stand at the present time in Canada, none of this is adequately addressed. And though it is well known that some campaigns have been hugely successful in focusing public notice and fund-raising because the kind of cancer it represents benefits from a sturdy level of support from survivors, while other cancers with an abysmally low survival rate have no one to help publicize its deadly effects and call for more funding, the inequality resists change.

The fragmented funding in Canada has been the subject of much conversation and debate in the medical research community. Basically, it is a situation where competition for scarce research dollars triumphs over common-sense funding for all cancer research projects impacting the lives of the public, particularly those whose morbidity remains high but which languishes because their incidence rate fails to resonate in the public eye and ear without the aggressive publicizing of survivors, because there are none.


The Canadian Cancer Research Alliance (CCRA) was born in the early 2000s. It has succeeded in ensuring a 60 percent increase in funding projects, while partnering with agencies from 2008 to 2011. Despite which, that funding disparity continues to exist. One area in which little has been done is research into cancer prevention, surely as vital a goal to achieve as cures. But prevention is allocated roughly two percent of total funding. Funding evaluations of research looking into the effectiveness of anti-smoking campaigns in high schools, for example.

Professor Siemiatycki puts this kind of situation down to agencies having a preference for research more likely to produce results in shorter time-spans, a success story that can be placed in an annual report to convincingly demonstrate to donors or taxpayers how well their investments have succeeded in producing needed answers to such vexing problems.  He cites the kind of research that focused on the realization that smoking causes cancer, a more lengthy project, taking over a decade to come to its conclusion.

Additionally, universities and hospitals have a tendency to take on staff researchers in fields attractive to funding which alone guarantees that disproportionate funding for grant proposals, reflecting a result that comes with over-funded, over-studied areas. The Canadian Institutes of Health Research's Institute of Cancer Research announced a grant program recently targeting the most under-funded and deadliest of cancers; lung, pancreas and liver, which sounded timely. But researchers were concerned over the CIHR's newly introduced grant review process meant to simplify and standardize applications.

And then, what was meant to move things along, led instead to chaos. And that led to over 1,200 scientists signing an open letter to protest the changes, delivered to the CIHR last summer, convincing it to return to the face-to-face peer review of old. And as far as Jim Woodgett is concerned, there are simply too many researchers competing in a shrinking funding pool, with too many funding agencies administering that pool.

The recent focus by the public on the announcement last summer by Tragically Hip frontman Gord Downie, of his diagnosis of brain cancer too far advanced to treat, was viewed as a potential catalyst to enlist a greater public reaction in research funding, augmenting limited research dollars and directing them toward high-mortality-rate cancers. The current reality is that vigorous campaigning by women has resulted in a disproportionate share of funding going toward breast cancer research, where the survival rate has ascended year-after-year.

“While breast cancer is the highest funded, it is the most common non-skin related cancer in women and also can behave differently based on the features of the disease,” the Canadian Breast Cancer Foundation said. “It is precisely the research funding that has been allocated thus far that has allowed incredible breakthroughs in the treatment of breast cancer… and has resulted in the improvement in mortality that we see today.” - See more at: http://news.nationalpost.com/features/the-fundraising-complex#sthash.Y3PoBs6A.dpuf

“While breast cancer is the highest funded, it is the most common non-skin related cancer in women and also can behave differently based on the features of the disease,” the Canadian Breast Cancer Foundation said. “It is precisely the research funding that has been allocated thus far that has allowed incredible breakthroughs in the treatment of breast cancer… and has resulted in the improvement in mortality that we see today.” - See more at: http://news.nationalpost.com/features/the-fundraising-complex#sthash.Y3PoBs6A.dpuf

“While breast cancer is the highest funded, it is the most common non-skin related cancer in women and also can behave differently based on the features of the disease,” the Canadian Breast Cancer Foundation said. “It is precisely the research funding that has been allocated thus far that has allowed incredible breakthroughs in the treatment of breast cancer… and has resulted in the improvement in mortality that we see today.” - See more at: http://news.nationalpost.com/features/the-fundraising-complex#sthash.Y3PoBs6A.dpuf

Failing The Critical Service Grade

"Transition can be tough, but it can also create opportunities."
"We are excited about what will be offered in 2017. Ultimately we know these changes [in the way the Multiple Sclerosis Society of Canada operates] will better serve people living with MS."
"The model we used to provide services in Victoria [British Columbia] was unique, and very expensive, which unfortunately made it unsustainable. The needs of people with MS are complex and critical, and as a not-for-profit we do not have the capacity to fill every gap."
Tania Vrionis, president, B.C. Division, Multiple Sclerosis Society of Canada

The MS Society of Canada's Victoria building on North Park street has been listed for $3.1M. (CHEK)

"The [MS] centre was somewhere safe where I could go with other people who were the same, who knew exactly how I felt when I said I couldn't do something. It was freeing. It freed us all to be ourselves."
River Grace, 67, Victoria, British Columbia

"Most people who use the centre don't have jobs. That's why they need it so desperately."
You've got somebody making $350,000 a year, and then you just took away services from a person earning $10,000 a year. There's something really wrong there."
To ask them to pick research over [alleviating] human suffering, you can't ask us to do that."
"A cure is not going to help the people who are suffering today [from multiple sclerosis]."
Susan Simmons, MS sufferer

MS Centre, Victoria, B.C.

For some reason that the medical community cannot understand, Canada has the greatest number per capita of people diagnosed with the central nervous system disease that the MS Society represents. One hundred thousand Canadians suffer from multiple sclerosis, the highest incidence of any country in the world. And the MS Society exists to serve that large demographic. To do so they have in the recent past offered to those whose interests they represent a venue for affordable physiotherapy and specialized exercise facilities.

The centre operated by the B.C. chapter of the MS Society operated as a template for what was assumed would be expanded services throughout the country. Now that template, in Victoria, B.C., is gone. The centre was closed last week leaving over 100 people in a province with 1,500 suffering from MS abandoned and the building that served them is now for sale. Simply put, the MS Society has decided to drop its emphasis on service to people with MS and focus instead on funding research into a cure for multiple sclerosis.

Along with deciding to focus on research funding, the MS Society made a decision to sell its properties and to use the proceeds of those sales for the funding of MS research. MS administrators have informed their members that they will lobby government at various levels to begin providing the type of services that the Society has been offering, instead. Which included physiotherapy services and grants funding housekeeping, snow shovelling, transportation and incontinence supplies.

Decades ago, the federal government announced that it would be cutting back on its funding of charitable medical organizations, to leave them with the responsibility to raise their operational funding from the private sector. Now, a charitable medical group is seeking to reverse that reality, unilaterally. With governments cash-strapped to provide the essential services they do maintain, how likely is it that they will obligingly take on yet another financial burden?

A reality that leaves the MS Society looking unctuously insincere. "We always assumed that the MS Society would roll this out [the type of services offered to MS clients in Victoria] across the country and start giving people the rehab that they need", complained another client of the Victoria centre. Typically, once local chapters close to consolidate operations, former clients find they can no longer afford the use of a gym. "It's more lonely. You don't get to get together with anybody", said Teresa Inger, in St. Thomas, Ontario. "It's sad", said the legally blind woman.

It is well worth noting that of the funding the MS Society receives, only 44 percent is used for charitable programs. Nine percent is spent on 'management' and administration, while 40 percent goes to fundraising costs. The latest MoneySense report on Canadian charities list the MS Society as having earned an overall grade of C+ for effectiveness, and a D for charity efficiency. Its top-paid executive earned over $350,000 in 2015, with eight other employees earning between $160,000 and $250,000. Nice work if you can get it....